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Friday, 12 December 2014

Recently there has been much talk on ME groups about ME patients doing physically challenging fund-raisers. I expressed my opinion on Face Book and thought I'd copy it here:

"Personally I am as uncomfortable with anyone who has ME (or previously had ME) doing a physical challenge to raise funds for an ME charity as I would be if:
- a type one diabetic decided to do a cupcake eating marathon
- a lung cancer sufferer decided to do a sponsored chain smoking event
- a coeliac was sponsored for eating a normal loaf of bread
- an epileptic was sponsored to spend an hour in a room with strobe lighting
etc. etc.

It is the fact the sponsored event is for DOING the very thing that causes HARM to those individuals is where the problem lies.

The fact that:
- the diabetic might be going to shoot insulin for his sugar marathon or,
- the lung cancer sufferer might be using ultra filtered herbal cigarettes or,
- the coeliac might be going to have his stomach pumped or,
- the epileptic might have a crash team on standby....
..... is totally irrelevant to the media who will use the shock value of the situation.

Considering that the media already likes to cast a slur on the ME population, preferring to highlight only our fatigue, I really feel very strongly that an ME charity should not help this media-spun "fatigue-only (but you can overcome it if you just try)" perception in ANY way!

And most especially not, by suggesting that physical challenges are likely to be harmless to an ME sufferer.

Sorry for being blunt, but that is how I see it.

The way the ££ is raised is important.

PS I have NO problem with healthies doing physical challenges.
My own family have run a marathon relay, and done a big cycling event to raise funds, and I (the ME sufferer in the family) was not physically challenged during the events.

Suggestions for ME patients:
- A sponsored month off sugar/milk/bread or whatever individual decides would be a challenge for them.
- Sponsored silence
- Sponsored haircut, hair dying or beard shaving/growing
- Sponsored month with no TV or no films or no Soaps
- Sponsored sleepathon or Pyjama days.
- I loved the Blue Tea Party Idea.. helped by others who are well of course

ME patients can also do a load of awareness raising for the healthy peeps who are doing those marathon events."

Wednesday, 8 October 2014

Recently Michael Evison added a "Cards for Karina" appeal to various groups on Facebook.

I fully support his campaign and will be sending my Card for Karina to Ketty Hansen, Karina's mother. I would like to encourage as many others as possible to do the same.

This statement is from Bente Stenfalk, a Danish ME Advocate who is in touch with Karina's parents:

AN OFFICIAL STATEMENT: Re Karina Hansen:

It is Karina Hansen's birthday is on November 7th.

Karina has been moved from the hospital in Hammel and is now being held here: Tagdækkervej 10, 8450 Hammel.

Karina has been placed in a home for people with brain-damage! No one knows why… Karina's parents are still not allowed to visit her and kept kept out of her ‘case’… and Karina Hansen still has a guard, who is not very talkative or helpful.

We all dearly hope that Karina Hansen has not been injured by the treatment she has got in the Hammel Neurocenter.

I Hope you will all send Karina Hansen a card for her birthday.

A lot of cards will show that she is NOT forgotten, and that she will never be forgotten.

You can either send your card to:

Karina [and Ketty*] Hansen, Tagdækkervej 10, 8450 Hammel, Denmark

or to her parents:

Per og Ketty Hansen, Kløvermarken 8, 7500 Holstebro, Denmark.

Karina's parents will try to give all the cards they get from you, to Karina on the day of her birthday.

So please show Karina Hansen and her parents that they are not forgotten by sending cards for Karina on her birthday on the 7th of November.

Also just as importantly, show the psychiatrists and the politicians that we still remember what they did to a severely ill young ME woman, and that we are a LOT of people, who hope something like this will never ever happen again.

It was illegal and wrong, and the psychiatrists hurt a young woman and her parents unforgivably.

Bente Stenfalk

Michael added his own commentary to this statement. He says:

My own opinion is that anyone opting to send their cards to the new hospital unit will be wasting their money and energy, as VERY FEW informed people believe that they will give the cards to Karina.

My view is that you are better sending your cards to Karina's parents address in good time for her birthday. That way, Karina's parents will see the out pouring of worldwide support for Karina from PWME on her birthday and every day that Fink is holding Karina against hers and her parents will.

Karina's mother is very touched by your generosity towards Karina and looks forward to seeing the many cards from around the ME world.

Thank you all

Michael

For those in the UK. IiME have many cards that they will write and post for you, if you have difficulty dealing with it yourselves in exchange for a donation to the IiME charity.

Let's all get behind this campaign.

PS It might be a nice idea to state where you live as you send your card. I'm sure international support is welcomed by the family.

*It has been suggested that cards should be addressed to both Ketty and Karina Hansen so that the centre is obliged to let Karina's mother know of their existance.

Tuesday, 30 September 2014

The Aviva Community Fund offers up funding each year based on the results of 3 rounds of online voting.

The first round has started and everyone can vote. Each voter gets a single vote per day - but if you remember to return EVERY day between 29th Sept and 13th October (Canadian times) then you can give all your votes to the same cause.

"The NATIONAL ME/FM ACTION NETWORK is a Canadian charitable organization dedicated to Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) through support, advocacy, education and research."

Friday, 26 September 2014

Working out what I CAN do without illness repercussions is important to me, because I want to be able to continue to dosome of the things I love!

My main tools for measuring my daily activities are a Fitbit and a Heart Rate Monitor. The Fitbit gives me a good idea of how much I've been active, and the Heart Rate Monitor gives me an idea of the intensity of my activities.

My main aim is to avoid PEM (Post Exertional Malaise) because that can lead to long-term losses in my ability. In this post I'll explain how I use my Fitbit, and in another I'll describe my tactics for using a heart rate monitor.

I've been using a Fitbit One since November 2012. It measures my daily steps, my active time, and also gives me an idea of my daily calorie burn. Here's a screen shot from my profile page today. (There is also a feature for recording sleep but I've stopped using it.)

One of my aims with this, is to always walk slowly enough that the orange "fairly active" line (in the time active graph) stays close to zero. At first this was incredibly difficult, but over time I've become better at taking things slowly. Obviously the red "very active" line never wavers upwards!

I have also created an Excel spreadsheetinto which I enter my daily steps. & I've set it up to produce some pretty graphs. :-)

Anyway, I've decided to be brave, and share some of this personal data, in the hope that it will help others to understand. So this is a scatter graph of all my daily steps since I began recording almost 2 years ago.

I became ill with ME 8 months prior to the start of this graph, and the most recent dip down was due to a virus at the beginning of the summer. Other dips, I suspect, were related to my attempts to do things two or three days in a row.

My Excel sheet also does some rolling averages: I tend to watch my 5 day rolling average (yellow line in chart below) quite carefully. If I see it creeping up, then I try to take a quieter day or two. Often it is not the single day up that is a problem, but rather when I do slightly more for several days in a row.

The most dangerous time is when I "feel better" for a few days. It is also when it is most difficult to pull back! The drop in this chart however, was that summer virus I mentioned earlier!

Blue columns - daily stepsYellow line - 5 day rolling average

Red line - 30 day rolling averagePurple line - 100 day rolling average

The red and purple lines, are 30 and 100 day rolling averages, and they give me a clear idea of where my activity level currently lies. I aim to be consistent from day to day, but it's not easy. A low step count like this means using a mobility scooter beyond the house, and also restricting what I do inside.

I also try to make a note of other activities that add to my daily exertion levels, such as going out to a coffee shop, or to agility training with my pup. I write these down beside the raw data (and rolling averages) for each day, with the idea that I can check back for patterns.

I'm not very good at recording subjective data about how I feel. I did try for a while, but no grading system seemed to work for me. To be honest, I think that steps are a fairly clear indication of how well I am anyway: I don't do fewer steps without good reason.

Looking forwards: Although that scatter graph above looks depressing, I think it is clear that I have at least managed to halt the early relapses that were probably caused by trying to do too much. (However, I regard that summer virus, as bad luck not bad management.)

I've no doubt my Fitbit helps me to moderate my daily activities in such a way as to minimise the chances of further relapses. In this way I believe I am giving myself the best chance of recovery, whilst still managing to do some stuff I enjoy. However the Fitbit doesn't really help me manage activities "in the moment". For that I use a heart rat monitor.

PS If anyone would like a copy of the Excel spreadsheet that I have created, please let me know and I can email it out for your personal use. I can be contacted at: keelatoo@ live. co. uk (omitting the spaces ;) )

Saturday, 20 September 2014

I was thinking about days when I go "out" and how, some events are more difficult to cope with than others. I now find a heart rate monitor is useful for helping me to cope with the unpredictability of events.

So my illness level means that I can leave home about 2, or maybe 3, times a week, but not really two days in a row, and generally only for a limited time. I also rest up a lot on a recliner seat in between times...

Anyway things that are regular, I can cope with as they are reasonably predictable. For example doing agility training with my dog - I now follow a routine for getting out that keeps my heart rate reasonably low, and this helps me cope.

The most difficult events are those "other" activities. Like last weekend, when the dog club decided to have a party in one of the club members' houses. It was partly a fundraiser for a local shelter, and partly a going away party for my daughter, Shona, heading to Uni.

There were 3 things I really wanted to do that weekend - I chose JUST the party. And it was a great night out!

I was out of the house for 4 hours, and stayed within my step count for the day. My HR was slightly high for most of the evening - probably because of noise levels and the room being warm. I was seated & I felt fine at the time.

Some of my "wee signs" were there 2 days later, so I had obviously been a bit affected by the outing.

However, I think the HR monitor helped, because when I checked it, I could see my HR gradually rising over the evening, and this fact prompted me to suggest we head home at a time well before any symptoms would have suggested problems.

It is for these irregular events that the HR monitor is so useful. That and using it day in, day out, and being aware of my normal patterns, so that I can see when something changes.

Of course, useful as it is, it can only help if I have the self-discipline to take heed of what the monitor tells me! And sometimes I feel that stopping at the right time, is as difficult as telling a toddler to leave half their bag of sweeties for another day!

Thursday, 11 September 2014

Early in my ME encounter I was told to avoid "Boom and Bust" and to aim for day to day consistency.

I was also given the advice:"Do only 60% of what you can sustain without producing symptoms".

Now these two bits of advice are excellent, but not at all easy to achieve. After all, if I really DID do so little, as to never produce symptoms, then how would I know if I was starting to improve?

I was thinking about this dilemma recently, and being a science teacher (prior to ME) I couldn't resist a few graphs to help me think all this through! Perhaps they'll help you too?

THE GRAPHS

1. PACING ZONE. In an ideal world our daily activities would fluctuate very little. The wiggly blue line on this graph shows only minor day to day change. I aspire to this! I am told this gives my body the best chance to heal itself.

Click any image to enlarge

2. BOOM & BUST! We all recognise this one! Something comes up that we want to do - and we do it! The thrill of the "doing" releases some adrenalin - so we keep on doing that activity. It's the classic BOOM scenario. I often hear folk talking about getting as much done on their good days as they can....

However, once we come down off this high we experience a big crash downwards, and for several days or more we are in the BUST ZONE and totally unable to do our normal activities! If lucky, we can BOOM & BUST and not loose any long term ability.

3. BOOM, BUST AND DECLINE.... This scenario is much more frustrating. Sadly it seems to be the one I find myself in. Any incursion into the BOOM ZONE, not only causes a crash into the BUST ZONE, but also changes my boundaries - apparently permanently..... (I called it a lowering of my glass ceiling in a previous post.)

The incentive to avoid BOOM AND BUST is therefore much higher, than if I could simply do a week's payback to recover previous levels.

4. PLAY UP & LAY UP. This is my compromise for those special moments. It is a very cautious move away from the PACING ZONE, involving voluntary LAY UPS both before and after the activity.

The "PLAY UP" moment is controlled as tightly as possible. I stop the activity while I still feel able to do more and start the Post Activity LAY UP no matter how well I feel. It is not easy. If I've got it right then I should have almost no symptoms. Ironically, it also might seem to others that my condition is not so severe - because I tend not to enter the BUST ZONE!

OTHER THOUGHTS:

THE RANDOM FACTOR. This is something that we might all encounter. A life event, or a viral infection or other wild card, can change the best laid plans. We can't control everything, but I feel we owe it to ourselves to treat our bodies as best we can.

TESTING BOUNDARIES? Obviously each time I succeed in "playing up" with out problems, I learn some-thing about where my boundaries lie. Further, by noting any small symptom responses, I can better judge how much to attempt next time.

SELF DISCIPLINE is key, because often I'll have to back out of something that I feel well enough to attempt. Friends are also likely to say things like, "Sorry you weren't well enough to join us...." and this makes me feel frustrated, because they are probably imagining me much more unwell than I actually am. Yet the concept of Laying Up is hard for well folk to grasp.

GOING FORWARD? I'm hoping that careful PACING with a little bit of Play Up & Lay Up will help me sustain my current levels and ultimately give my body the chance to heal itself...

Wednesday, 3 September 2014

Sarah Loveland is one such individual. This Saturday she will be doing the 5.25 mile "Chill Swim" in Coniston Water, Cumbria.

This will be no small challenge to Sarah. Just two years ago, having not swum for 20 years, she happened to watch the "Great North Swim" at Lake Windermere. She says:

"I just got it stuck in my head that I wanted to do it!"

However when she started training, she discovered she could do no more than half a length at a time!! Undaunted, she took pool and open water swimming lessons to improve her technique and stamina. The following year she swam that "Great North Swim" herself!

"As soon as I started swimming in the lake I was totally hooked!"

Now she is aiming much higher. Inspired by a Face Book friend who suffers from ME (and did a sponsored walk to her garden gate), Sarah has dedicated her Coniston Water swim to raising funds for Invest in ME.

Click on image to magnify - thanks to the organisers for the image

To date the farthest Sarah has swum in open water is 4 miles and unpredictable weather can make this sort of swim much more difficult! As Sarah says:

"Don’t go thinking that I love swimming and 5.25 miles is going to be a breeze. It’s definitely not. I discovered that swimming in choppy water is something that scares me."

And swimming within a large group may also be a challenge. Ever pragmatic, Sarah says:

"All I have to do is swim from one feed boat to the next, get some energy drink, gel or jelly babies (different boats have different things) and then onto the next."

Here's hoping that on the day the waters will be smooth and that the almost 5 hours that it will take Sarah to complete the swim will pass easily.

Sunday, 24 August 2014

Anne Keith recently made an excellent comment on Facebook in response to this video:

With a few edits for clarity, this what she said:

So very sad.

Myalgic Encephalomyelitis (M.E.) can be extremely devastating yet there is a whole group of psychiatrists who try to dismiss this as an imaginary disease caused by pessimism, over-exaggeration, or activity-avoidance. Would a teenager really stay in bed for years, allowing herself to be tube-fed, because she is whiny? Have you ever met anyone willing to suffer 50 hospitalizations for fun? Did this girl decide to die because she was lazy or because she was unbearably sick?

Ridiculous and insulting doesn't begin to cover the off-handed dismissal of such deep suffering.

Early on, a psychiatric explanation was one of many theories which deserved to be explored. That was long ago. It was shown to be unfounded years ago, when the physical underpinnings of M.E. began to be documented. Despite a paucity of research funding into the physical causes of M.E., it has now been shown to most likely be an auto-immune disease, often initially triggered by minor viruses. Numerous physical abnormalities have been found by a wide variety of top-level scientists throughout the world.1

Any claim that this is a psychiatric disease is now driven by three things: egotism, greed, and ignorance. Members of the "Wesseley School," mostly in Britain, decided early on that M.E. (which they now call Chronic Fatigue Syndrome) must be mental illness even though they had nothing to back up their guesses. They happened to be in influential places at the right time and they increasingly shaped the perception of this illness. They are clearly aware of all the physical findings yet they neglect to mention or act on these "inconvenient" facts. Their self-serving refusal to include these findings is scandalous.

Their flood of misinformation has left both the public and most treating physicians in ignorance. The truth is that, just as multiple sclerosis is not "faked" (as once claimed by psychiatrists), and as epilepsy is not caused by demons (as "everyone" once knew), so M.E. is not caused by "wrong-thinking" or "activity avoidance." There are well-known immune abnormalities and a very unique - and dramatically abnormal - response to exercise that can be definitively shown by a 2 day treadmill test.2

It is time for the medical community, and for the public at large, to denounce this group’s disingenuous "research." Their studies, including the massive ‘PACE’ study in England, intentionally exclude the sickest patients while they include those who merely report "being tired" (that is, who do NOT have the illness' distinguishing symptom of an abnormal response to exertion).3

This group’s studies could be compared to someone claiming to do lung cancer research which excludes those dying of lung tumors while including those who have a "tickle in their throat." Just as no doctor would accept any study that defined lung cancer as "a cough," so no doctor should accept any M.E. study which defines this illness as "fatigue." Doctors would denounce the "cough” study’s claim that over-the-counter syrups and cigarettes improved patients’ outcomes. In the same way, they must denounce "fatigue" studies that claim “right-thinking" about symptoms and/or increased exercise cures M.E. Patients are being directly harmed by such ego-driven, self-serving "research."

It is just wrong that these people have abundant funding while far better researchers (such as Lipkin, one of the world’s best virologists) are forced to literally beg in order to get basic funding to research this illness.4,5 It is past time to stop funding junk studies and start appropriately funding real research that further explores the physical causes of this catastrophic illness.

What can you do? Shine a bright light on this scandal. Share stories like this one as widely as you can. Help support M.E. advocacy, often done on a shoestring by suffering patients. Ask your politicians to fund REAL research instead of wasting money on poor studies designed to support psychobabble treatments. Tell the stories of M.E. patients you know (with their explicit permission, of course) so that they no longer suffer in silence and obscurity. Most of all, speak up when you hear someone say "everyone" knows M.E. is the same as depression, laziness, or normal fatigue - and clearly state it is anything but that. Help stop the self-serving psychiatrists, who appear determined to further their own interests (science and patients be damned), so that not even one more patient has to experience the living hell that Lynn and her mother suffered.

The monitor "optically measures blood flow" - which basically means it uses lights. The promotional material says it is for use on the forearm but I have also strapped it to my ankle successfully.

It charges via a handy docking station, so no expensive batteries. The blue dots are my addition so that I put it in the right way around!

The device is MUCH more comfortable than a chest strap monitor, and also seems to transmit much more reliably. In fact provided there are no solid walls in the way, it can transmit across quite a distance.

The thing that felt strange at first, was that the monitor doesn't have it's own readout. However, it sends the data via bluetooth to a variety of phone apps. I chose Endomondo.

Once monitor and app are all set up to communicate with each other, this is very simple to use. And it is not just a HR monitor, you can also link it to your phone's GPS and so see where you've been on a map and track your speed and distance!

I mostly just use the HR feature and the read out looks like this.

The slider at the bottom appears so that the display continues, but the screen is locked.

After finishing the "session" a summary can be accessed:

And also a time-line, showing how HR varied through out the activity:

There is also a chart showing how long was spent in each "zone". I edited these zones online so that the the boundaries between the zones are: 60, 80, 100, 120 and 140.

Here you can see I spent almost 3 minutes above 120 bpm.

The phone data is only available immediately after the session. However the data is transferred to your online Endomondo account via Wifi. All the sessions are then stored for later analysis.

The graph in particular is easier to interpret online.

There is a facility to tag and name each session. I tend not to bother, but rather just use the system for feed back whilst active, and then when I review things later that day on the computer.

Anyway, it's all very interesting, and I think monitoring my HR is definitely helping me understand where I spike my HR and therefore what activities I need to be careful with....

..... more thoughts on that later.

In the mean time I hope others have found this review useful, and might be encouraged to also start monitoring their activities.

It's not going to "cure" ME, but hopefully as a sort of budgeting tool, this can prevent me from becoming "over-drawn" on my energy account and incurring a high-interest payback later.

PS [Jan 2015]I now use a Mio Alpha HR monitor that has some advantages over the Rhythym+ 1. It has a read out like a watch2. It can run all day on an overnight charge3. It has an alarm function that beeps when my HR goes too high.It can also "talk" with Endomondo on my phone so that I still get my pretty graphs!Sue Jackson describes her Mio Alpha in a blog post here

Some more of my Heart Rate Monitoring posts can be found here: Just ME INDEX